#also I’m chronically fatigued and in the worst shape of my life so WELL SEE

[foldingfittedsheets]

For their birthday I’m taking my betrothed @aorryn47 to forge a knife. There’s classes at a forge not too far from us and we’re gonna make a knife out of rebar. Got a bunch of friends to go and do it together.

I fully expect my knife will be so garbage but I’m terribly excited to make it anyway. (Theirs will probably be quite nice).

[thunderheadfred]

It’s my birthday so as a gift to myself I’m listing all my personal growth from the last few months

Lost 50+ pounds, well on my way to shedding 100+. Did this very simply with zero self-hatred or shame. Intermittent fasting and sugar elimination were pretty much the only requirements. Took time to adjust and a willingness to cook more, but that was the only struggle. In addition to the weight loss, my inflammatory and immune problems have been greatly improved. Chronic fatigue is still with me, but isn’t dictating every second of my day, and I hope CFS continues to diminish as I get healthier. Resources I used are now helping my dad reverse pre-diabetes, which is the cherry on top.

Went through perhaps the worst existential crisis of my entire life (and boy howdy, I’m well-rehearsed) and didn’t die. Didn’t die so hard I actually woke up from decades of numbness and changed my entire life almost overnight. This “instant” change was enabled by several years of work via intensive outpatient, group therapy, 1-on-1 therapy, medication, and deep interior work I’ve done on my neurochemistry and mental health. It feels like foundations were laid for me to finally take a huge forward step into hope and change. I finally let God back in, and have felt vulnerable, humbled, and vibrantly alive in a way I haven’t experienced since childhood.

Started re-exploring my own spiritual health, perhaps the most difficult and intense part of this transformation. Deeply personal, difficult to find words. No labels for it. See re-enrolling in college, below. Much to learn. Adjacent to this, have encouraged Catholic husband to join an inter-faith climate group, which he did. His parish church now looks likely to form their own climate support group in addition.

Re-enrolled in college for fall 2023. Built a 3-year interdisciplinary plan to graduate with a major in Dakota Language and American Indian studies, with minors in sustainable agriculture, art history, and art.

Became involved in local politics; I’ve personally met my senator and congressperson and thanked them for their work. They know me by name and I will continue to keep up with legislation on local and federal levels, vote in every election, and advocate for policies I believe in.

Started educating myself on the policies that have shaped our current situation. This is often overwhelming, and I remind myself constantly to do it in stages, to not burn myself out or get lost in anger and hopelessness. Nevertheless, it must be done. In particular, I’m finding Robert Reich’s free YouTube course invaluable for this, though it has made me cry several times. Labor movements are taking off across the country and this gives me immense hope that I’m far from the only one sharing in this experience. Millions of us are waking up to our own democratic power, and we can change things together, one step at a time.

Also started researching absolutely everything about reducing my personal carbon footprint, increasing self-sufficiency, and having at least some baseline readiness for disaster scenarios, a process that continues. Immediately stopped eating beef and pork (and most meat, actually), stopped purchasing things online and from big box stores (whenever feasible) and started walking to our local grocery co-op several times a week.

Encouraged husband to get involved in our HOA, a goal he’s had since we moved but was unable to make good on because of his work schedule (now blessedly changed) - we will soon be making a concentrated effort to meet all of our neighbors, initiate neighborhood gatherings, and encourage green initiatives in our immediate community.

Joined the local arm of 350.org. Have already done tabling and multiple advocacy campaigns. Husband is on the clean transportation team, focused on bringing electric school buses to schools. I’m on the food systems team, currently working on expanding our state’s farmer’s market SNAP program so more people have access to affordable local produce.

Expanded my patio garden to several raised planters full of herbs that I’ve been regularly using. A few things didn’t work out, but I’m learning what thrives in that location and have grown the most delicious tomatoes I’ve ever eaten, with basically zero effort. Working on a plan to build a small deer-proof Three Sisters food garden in our limited backyard space.

Started my basement cannabis grow tent, have two plants thriving and bringing me joy when I talk to them every day and tell them what lovely ladies they are.

Converted all our household power draw to sustainable wind (this took all of one phone call to our utility provider) and in a few days we will have meters installed on both our hot water tank and our air conditioner, so those are cycled during peak hours for even less energy consumption.

Started fishing together with one of my oldest childhood friends and my dad. Went from zero outdoors experience to learning how to hook minnows without flinching and hold a beautiful emerald-green bass in my hands. An amazing experience that will continue through the season.

[mindfogandsleep]

I have chronic fatigue as well. Do you have any tips on trying to manage it? I've done all the bs lifestyle changes, blah blah blah. But I would love to hear from someone who ACTUALLY has chronic fatigue. Any advice?

Advice for CFS sufferers from a CFS sufferer.

First things first I want to make it perfectly clear that everyone with CFS/ME is different and because of this things that work for me might not work for you or others. However, I’m going to give some advice based on things I do or things I wish I did.

Food and Drink

It is important to make sure you continue to eat and drink even when you are on your worst days. You may not feel a lot better when you’ve eaten but believe me you will feel worse if you do not eat. Food is important and so is hydration.

Microwave meals are a lifesaver. They may not be the most nutritious thing and they may not always be the nicest but it is always better to eat something than nothing. Microwave meals take next to no effort. Pull it out the freezer, pierce some plastic and away you go. And you can get such a variety of things. Please do not neglect your body.

If you do want to cook, be productive on your better days. Cook up things that you can freeze and come to easily. Things like tortilla based foods, pasta based meals, even rice can be cooked and frozen and recooked. This was pretty much what I lived on when I was at uni the first time because it saved so much energy which I rarely had at dinner time.

If you are in bed and struggling to get out keep a large drink by your bed. I have a cinema special edition cup that I got at a midnight screening once. It holds a litre and has a really long straw so I don’t have to worry about holding the heavy cup or even sitting up properly if you don’t want to or can’t. If you’re out and about carry a drink with you.

Coffee is useful but don’t rely on it too much. Coffee may give you an energy boost but most people even without a chronic illness feel a come down from coffee, imagine that come down with the addition of always being fatigued. I am guilty so much of over using coffee and it’s not good when the come down happens.

Clothes

It can be hard if you’re used to wearing clothes with a lot of buttons and zips and heals or what have you because dressing can be difficult and can take a lot of energy that you might not be able to spare. For me, hoodies, t-shirts and jogging bottoms are a must. They are easy to get in and out of and comfortable whether you are out and about or lounging inside.

The other thing is pyjamas. With CFS you’ll probably spend more time in your pyjamas that you did before you had CFS. Invest in cute pyjamas. Ones with your fandoms on or cute animals or whatever it is you’re into. If you’re in Britain Primark is great for cute pjs, I love them because they’re so cheap. Continuing the pj theme, you need to have pjs for warm and cold weather or warm and cold you. Sometimes it’s like 25oc outside and you will be freezing, sometimes it’s -5 and you’ll be boiling, so bear in mind that the temperature outside doesn’t necessarily correlate to the temperature of you. Fluffy socks are great too.

Personal Care.

If you have a bath and a shower at home, find out which you find easiest and do that. I personally find showering easier because while standing for long periods is difficult, I find that baths cause me to go lightheaded and feel really off. It is okay to go a few extra days without bathing/showering than you normally would. You may feel kinda off because of it but it’s not the end of the world and resting up is definitely more important than washing your hair.

On the subject of washing your hair, invest in dry shampoo. I’ve not used it but I’ve heard a lot of other spoonies talking about it and how useful it can be. If you’re struggling to bathe or shower but you want to do something, things like strip washing while sat on the toilet seat can be really helpful as well.

Mobility and Life Aids.

This is a really big one: Do not be afraid to use aids. Do not be afraid or ashamed to use anything that might help you. Whether this is a walking stick, a wheelchair or anything else, you are allowed to use it. You are disabled enough, you are ill enough. I’ve known people with chronic illnesses who have been afraid to get mobility aids because they are young, because people are more ill than you or whatever reason. It’s bullshit, okay. I don’t care if people think you don’t need it. If you feel like you need it and it will help you then you have every right to get it.

I don’t use a great amount of mobility aids but I have recently brought a walking stick and it has honestly made the world of difference for me. It’s lengthened how long I can walk for, how long I can be upright, how I can be out. I put off getting it for a long time for the reason above and it’s stupid because it helps. If you can be helped by getting one, do so.

This goes for everything. This does for anything that can help you. Things that are generally advertised towards older people are not solely for them. You are never too young for an illness, you are never too young to need something.

Entertainment

This is a bit of a lighter note but when you’re in a place where you can’t go out or you can’t go out for very long, life can get really really boring. If you don’t have the energy to do a lot you need to find things that you can do will you are stuck at home. I have a few things to recommend but there really whatever you can manage is great

1.       Netflix. TV and DVDs are great but Netflix is a life saver for me. There is a lot more on there, it’s very easy to find something new to watch whatever mood you are in.

2.       Audiobooks. Getting a subscription to Audible was a wonderful decision for me. I love reading so much but I don’t always have the energy to follow the words or even hold a book, so having an audiobook means I can still get the entertainment of books without having to put so much of the effort into it.

3.       Crafts. If you’re able to do things with your arms without getting achy, I definitely recommend some sort of craft. I make things out of felt, but drawing, sewing, decoupage, writing, colouring books, anything really to keep your brain stimulated.

4.       Phone Games. You have next to no energy but you’re too awake to actually sleep, phone games are wonderful. They take little energy and little concentration.

5.       The Internet. I wish I had known how great the internet is for spoonies when I was first diagnosed. God, it is wonderful.

Like I said, there are more, there are so many more. These are just a few I use.

Medication and the Medical Profession

Every spoonie to ever spoon knows that the medical profession is an endless cause of frustration. You’ll regularly go to your doctors and be told that you just need to pace yourself or that it’s mental health related or this or that and what they are really saying underneath all of this is ‘we know jack shit about this illness’. It is important to find a doctor who believes you, unfortunately there are still a large number of medical professionals who don’t believe in CFS and it fucking sucks. Find a doctor who believes you, who listens to you and who at least tries to help even when there isn’t anything they can do. You have every right to change doctors if the one you had is more harming than helping. Remember that.

Get doctors to check for other things. Don’t allow them to put everything down to the CFS. A lot of the time it will be. A lot of the time you will find that there is not logical explanation and you’re going to have to get used to that. But sometimes there will be other things as well. I was anaemic while also having CFS and iron tablets made the world of difference to me. I was on iron tablets for two years and my iron has finally normalised.

If you suffer from brain fog, before going to the doctors make a note of what you wanted to talk about. It can be in depth or it can literally just be bullet points to trigger your memory when you get there. If you are worried you’re going to forget what the doctor has said to you, ask them to write some things down for you. They should be willing to do so.

If you have medication, do whatever it takes to remember to actually take it when you’re supposed to. I use a pill organiser so I know whether or not I have taken them each night. I find I have to check twice that I have filled it properly, brain fog can honestly be a problem with this. But pill organisers are definitely useful. Alarms are another thing that is useful. If you have to take something the same time each day set an alarm that says ‘tablets’ or something like that so you remember it.

Painkillers are your friend. See if you can get them on a prescription because you will probably end up taking them regularly. You will often find that they don’t help or only scratch the survive of the pain, but believe me it is better than nothing at all.

I hugely recommend keeping certain things in your house. I have a drawer of my bedside cabinet that has my prescriptions and other related things in it. Keep in painkillers, heat pads, cool pads, a first aid kit, lip balm, and probably some other things that I can’t think of right now.

Emotions

Having an illness like CFS messes with your mentally as well as physically. This is partly because of the effects of the actual symptoms and partly because of other people’s reaction to you. People suck when it comes to illnesses and disabilities. Being diagnosed with CFS is a life sentence that often comes along with losing friends and family members, it often means having to stop studying or stop working. It is a complete shape up of your life. It’s the knowledge that this may or may not get better and if it gets better again it may just as tell get worse again.

Whatever you are feeling is okay. You are allowed to be angry, you are allowed to sad, you’re allowed to be frustrated. There is no correct way to feel about your illness or the way you are being treated because of it. You are not doing anything wrong if you’re so angry you just want to scream at everyone. You are not doing anything wrong if you just want to cry and cry. People will spout a load of shit about positive thinking but it is unhealthy to be positive all the time and if you are upset or angry or whatever you are allowed to be. Don’t let anyone tell you that you shouldn’t be feeling that way.

Out and About

You are likely to miscalculate the number of spoons you have. This can go either way but you are very much more likely to overestimate. Don’t let your illness stop you from doing things if you feel like you can do them. But on the flip side don’t do things when you are too ill because you feel like you should be. Sometimes you will go out thinking you can deal with a day of action and you after a couple of hours you will find that you actually you really don’t. It is hard, almost impossible to properly calculate spoons.

1.     Take your Mobility Aids. There is a change you won’t need it but it is 100% better to carry it with you and not need it than to need it and not have it with you.

2.       Rest along the way if you need to. Whether this is leaning against a shop window because holy hell suddenly the world is spinning to fast, whether it’s stopping by a café because getting a drink and/or a snack will give you an excuse to sit down for, well, as long as you need really, or whatever it is but listen to your body and give it the rests it needs.

3.     If you need to leave something early do so. Is it frustrating? Does it make you feel anti-social and boring? Yes and yes. But if you cannot manage what you have organised even if you are part way through it and you need to leave do so.

4.     Have a back-up plan for getting home. Now this is something I don’t do and really wish I did. Say one of your friends is the designated driver and you are on a day out and suddenly you don’t have the energy to go on but you also don’t want to ruin the rest of your friends’ day. Have another way to get home: someone who can pick you up, public transport, whatever but have a way.

Other People

People can suck. We all know this anyone but having an illness like CFS you learn a whole new way in which people suck. And you learn, sometimes, that it’s not stranger that suck all the time, sometimes it’s your closest friends. I’m very lucky now because I have friends who do their utmost to understand and help in any way that they can but I haven’t always been so lucky. I was thirteen when I was diagnosed and I was off school was seven weeks before any of my friends got in contact with me. People don’t always bother with people who aren’t around anymore and it’s really sucky but it happens. It hurts, it hurts a lot, but I promise you there are better people out there. You will find people who care about you whether you are healthy or ill or whatever else.

Family and friends won’t always believe you. People will make comments about how you are exaggerating, how you are lazy, how you need to just push through. They will tell you’re making their life difficult because of your illness, etc, etc. There is no end to abled-peoples insensitive comments. I’m sorry but the only thing you can really do here is learn to let it go over your head. It will take time but eventually you’ll learn that you are the one in your body, you are the one who know what its really like and that you are not a burden, you are not a problem, you’re just a person who is ill.

Everyone and their aunt has a ‘cure’ for you. Everyone knows someone who suffered from it and if you just ‘try yoga’, ‘cut out gluten’, ‘change your diet’ you will be better again. It’s bullshit. It is a chronic illness and chronic illnesses mean there is not a cure. People are insensitive as I have said. Ignore them the best you can and focus on the things that you know to help or hinder. Once again, you are the one in your body after all.

Self-Care.

This is probably the most important part of all of this and it encompasses pretty much all of the headings. Looking after yourself is the most important thing. You need to put yourself first, you need to make sure you are doing everything you can for your health, for your well-being. If this means sometimes you just put on clean pjs and go back to bed, then you do that. If this means laying in a bath until the water is almost cold, do it. If it means lying on the sofa with a blanket and a teddy and a cup of tea do it. If it means pushing yourself a bit too much one day and dealing with the consequences for a week then do it. You deserve to put yourself first!

There is probably a lot more I could say but I think this is long enough already. I really hope this helps lovely and that it wasn’t too intense to read. If you want me to talk about any specific subject either in more detail or something that I haven’t touched on at all please feel free to message me again. Hope you’re having a less than terrible day. Love and spoons. xxx

[dwjensen]

Cream Buns & Kin

December 20, 2017

            One of my earliest memories as a child was being at my Grandmother’s house seated around the kitchen table between breakfast and lunch times. I’d already had my fill of the stodgy porridge that was threatening to stick to my stomach lining until I was a teenager, yet the smell of fresh bread that suddenly wafted into the room had me quivering like a gundog on the veranda. Just as I was about to start chewing on my own arm, an old bamboo basket filled with freshly baked bread and pastries floated into the room. This was carried by the local baker who pre dated the basket but who also chose my Grandmother as the last of his customer rounds on the given premise of a cup of tea and a chat with one of the last remaining of his neighbourhood peers.

[Image: A Cream Donut, devoured by Darryl shortly after this picture was taken.} 

            I’m sure that I’d encountered this jovial man before, but this visit was highlighted by his sundry of pastries that he’d been unable to sell on his rounds that was then offered at a discount to his last customer. Maybe my puppy eyes worked on my Grandmother or perhaps God thought that I needed a glimpse of heaven, but whatever divine or canine intervention occurred that day changed my culinary world forever…I ate/inhaled/gorged myself on my first cream bun. Since then the cream bun and I have been friends over many a morning tea and of late, a midnight/early morning/afternoon/”oh what the heck I have cancer anyway” treat.  The problem with living in a rural setting however, is the availability of such simple pleasures. Should a hungry mob of backpackers or a convoy of truck drivers pass through the area of local supply like a swarm of locusts, then the pickings have to be sourced further afield. This is what occurred not so long back and though the shopping list did incur cream buns, I made it clear to Laurie that if there was none to be found, please don’t worry about holding up a bakery at gunpoint.

            It was when Laurie returned from shopping that day, however, that my love affair with cream buns…and my outlook on many aspects of my life took on a new perspective. To be honest, I have no idea how it started, yet the marital spat that incurred was the worst in the history of our relationship. While unpacking the groceries, Laurie made an off hand remark that she couldn’t find any cream buns, but she had asked one of the employees at the shop who had magically produced a packet of what I saw to be cream donuts (for the uninitiated, this is a long pastry made of donut dough and filled with cream and jam). I retorted casually that these were not cream buns but cream donuts. Laurie parried and thrust again her point that the young girl had said that these were indeed cream buns, just the local shop’s version of the same.

            Now, only to defend and not to excuse my consequent behaviour, it had been a week of emotional and physical extremes for me. In no small part, I felt some cerebral symptoms appear in the shape of memory loss and vision abnormalities. With the frustration of this and Laurie actually appearing to argue with me, I countered her claim more assertively, stating that I knew such items from childhood and that she was wrong. It was this that triggered the most ridiculous argument in history and one that saw my temper reach new heights. Laurie responded with further counter claims that she had gone out of her way to purchase them for me and that they were indeed cream buns. My paranoia of a perceived mental incapacity sent my irrationality into overdrive as I yelled (kind of – my voice wouldn’t let me yell causing even further frustration) that I knew what I was talking about and for her to stop arguing with me. Laurie continued with the same argument, with a matching pitch of intolerance that began to make me see red and ended with me yelling as high as I could for her to “Shut up and stop arguing with me!” These hurtful words ended the argument, but not the angst as I retreated to the patio to catch my breath and Laurie escaping to her office, clearly upset and hurt deeply by my behaviour.

            It took me less than a few minutes of internal debate to realise that no matter how credible my argument had been, the harshness of my words and the ferocity of their delivery outstripped any sense of credibility from me. I was totally in the wrong and had to unconditionally apologise. I did this without further delay and received the expected cool response. I repeated this several times that evening, still expecting and receiving the minimalist acceptance and decided to wait until the morning for the tempest to abate.

            It seemed that Laurie’s ire was still smouldering for the best part of the following morning. Her mood matched the chronic ache of my perpetual flu like symptoms that clung after a week following chemotherapy; coupled with fatigue and hormonal mood swings. By lunchtime, I’d decided to confront the obvious and asked how many times I had to apologise before I’d be forgiven or at least put my mistake to bed. Laurie responded by stating that she was simply tired and didn’t sleep well the night before.

            Unfortunately, it appeared that my apology hadn’t been as authentic as I had thought because my next words seemed to echo my sentiment of the previous day. “If you want to know what tired is, try standing in my feet for an hour,” I blurted out without restraint. Laurie’s tirade was inevitable: “Yes that’s right Darryl, you have cancer, it’s all about you. You don’t have to cook or clean or look after anyone else because you have cancer. You have it at night-time and in the morning and you can say anything to me and crush my heart because you have cancer...and I don’t!” 

            We spent the next 20 minutes in each other’s arms. Our communal tears seemed to wash away the weeks, if not months of built up stress and deep sadness.  My words had broken the heart of my beloved and Laurie’s had paid me back in kind; yet the wounds brought us together again, stronger and with a greater sense of each other’s needs at this time. It seemed that the humble cream bun had played its part as the catalyst to always stand by each other, but there was greater to come.

            In my last blog I stated that my siblings and I have been reunited after many years. The reasons for our estrangement are multi-layered and embedded within our own levels of blame, pride and perceived judgements. The result has been years of non-communication and missed opportunities of sharing each other’s moments. This trend was broken last week when I was visited by each and every one of my beloved sisters and brother. Though their visits were brief, the love and joy that they generated eliminated the years of being apart and I felt/feel like a kid at Christmas again. To embrace all three, even if it were for the last time, was more than a dream come true, but a divine gift designed to be granted like the treasure of a lost toy to a small child. 

            During his visit, my brother asked my opinion of why we were never (it seemed) a close family. At the time I couldn’t answer as it seemed an impossible question, but as I realise now, it is as simple as the humble cream bun. Had we been raised in a culture of unconditional tribal support where we all stand for each other, maybe the closeness would have been there. Maybe if we had displayed more family pride instead of family competition, we would have been more empathetic to each other and not so distant. And maybe if we had offered more mutual support instead of judgement, we would have been bound by our instinctual bond and not by some contractual DNA.

            Family, friends and even strangers naturally come together during times of mutual understanding. We all also seem to come together in times of mutual loss. It is when we don’t try to understand, nor even care to due to our own circumstance, that we drift apart and become separate entities. If my siblings (including myself) had stuck together in the hard times, we would have enjoyed that closeness. In the same context, if I had understood Laurie’s efforts in caring for me, I would have praised her and not hurt her. 

            So next time you see a cream bun, say thank you; and please mail it to me, I’ve such a craving.

F.Y.I. The local Sarina I.G.A.’s donut shaped sweet bread cream buns taste exactly like the traditional square cream buns. Dam it, she was right, again. 

[suchawonderfullife]

Update: My progress,pitfalls and EMDR therapy

I checked out of Hansa 73 days ago and recently hit the halfway mark between the day I left and the day I will return for round 2. The journey has been incredibly challenging. I have spent weeks upon weeks being made sick by my treatment, having to continually stop and start various or all remedies, to the point where I could only do 3 days on, 1 day off and still be feeling very ill. At times I was in tears and not wanting to do it anymore. I’ve had days where I was angry that this is my life and 90% of my day revolves around therapies, treatments and exercises. Then I felt guilty for that train of thought because I should be grateful to have been given this opportunity to get well. It doesn’t mean it’s not hard and I can’t vent at times though. 

After those turbulent and horrible weeks, something changed. I worked out that one of my liquid remedies and one of my tablets were both making me herx and I was taking them together in the morning. When I stagger them, I no longer get the same severe reaction. I worked out dosages that don’t push my body over the edge and I’ve just completed 5 and 6 days of treatment in a row, rather than my previous 3 days. 

I’m noticing many improvements as well. My stamina has improved. Everyday I have more energy. It’s not a tremendous amount, I’m not out running 5km or working a full day. But I can pace myself everyday to complete multiple tasks and it (so far) doesn’t make me really sick. I might run an errand and do a few chores around the house, or leave the house for half the day and still be able to come home and cook dinner. Doing those kinds of things consistently is not something I’ve been able to do for over 6 years. I would usually have to do one household chore and that would be my days energy, or I wouldn’t be able to leave the house AND do something around the house. My payback is far lesser as well. I’ve spent days where I’ve left the house for half the day, come home feeling quite exhausted, yet been fine or only mildly tired the next day. 

In regards to my energy, I also realised I have these periods of feeling “manic.” Just incredibly energetic and upbeat. This may last a few hours or half a day. I told one of my friends about my persistent “manic” periods and her response was “maybe you’re not manic though. Maybe that is what ‘normal’ feels like and you’re just not used to it.” That’s a cool thought huh? Because I’m not mentally unstable, I’m not having dips of depression, but these periods of high energy. Maybe that IS what normal feels like? I’ve lived the past 8 years constantly fatigued and unwell, so feeling ‘normal’ would be incredibly foreign.

I haven’t bitten my nails in several weeks. It’s as if my nervous energy has lessened dramatically. Usually, I bite my nails constantly and I could never help it. It was like a subconscious nervous energy I always had and no matter how hard I tried to not do it, I couldn’t help myself. I just don’t feel the urge to do it anymore. My liver and spleen haven’t ached in quite a while, I can’t remember the last time they did. I can’t think of any other specific improvements at this time, but I know I just feel overall better and am slowly improving every day. I still have symptoms that suck and days that I feel shit. But the overall picture is a good one. 

EMDR THERAPY:

Then I started EMDR therapy. My Hansa Dr recommended it due to my limbic system dysfunctions and experiences of various traumas throughout my life. My Dr commented that all chronically ill patients have limbic system dysfunction and that those who focus on repairing this recover far better than those who don’t. EMDR stands for Eye Movement Desensitisation and Reprocessing. Here is my very basic explanation (not guaranteeing it’ll make sense): You see a psychologist who is trained in this method. You bring up an issue or trauma you want to work on/deal with. After deliberation, your psych will have you pick an image of the memory you are referring to and to just hold that thought while they move their fingers or rod side to side in front of you and you must follow that motion with your eyes for around 30 seconds. Your psych will then stop and check in with how you’re feeling and any thoughts that came up. You do this several times and your mindset begins to change. What this exercise is doing, is the eye movement is making the memory blurry. Once the memory is blurry, your psych then helps your brain reprogram the memory in a more healthy and emotionally stable way. It sounds super weird, but here is a basic 2 minute video explanation https://www.youtube.com/watch?v=hKrfH43srg8

There’s also this 7 minute video of it being done to a guy and I will tell you, I had exactly the same reaction as he did. It goes for longer than this and is a little more complex than shown: https://www.youtube.com/watch?v=KpRQvcW2kUM

So I had my first session with my new psych and I went there in a very bad mood. I felt this resistance to wanting to do the therapy. Understandably too, because who wants to go to consecutive psych sessions just talking about the worst things that have ever happened to them, having to really connect with those memories and work through them? I realised I didn’t feel comfortable with that particular psych either. She was really lovely, but I felt closed off and unable to open up. It took me a few weeks to realise I should make the effort to find a new psych, to make sure I do this therapy right and to give myself the best shot at recovery. 

I booked in with a new woman and had my first session with her a few weeks ago. Luckily, we connected far better and I’m comfortable enough to keep seeing her. Our first session was just the typical get to know you, what’s your life story kind of thing. Then the second session we actually started some EMDR. I talked about how anger was a huge issue for me. My liver is my worst affected organ, which is where anger is stored. I am very reactive and easily triggered, yet I’m not aggressive or violent. My anger becomes something I store in my body and only comes out in passive aggressive bursts. My psych said that the way I deal with anger is something I learnt in my childhood and it would be great to work on something from my childhood that made me mildly angry, just to start. So I had to think of a memory that stirred mild annoyance in me. 

After a few minutes, I came up with a fight I had with my brother when I was maybe 10 years old. He called me fat and I called him a name back. I was hurt by being called fat, so when I went to tell my mum that he had called me fat, I wanted sympathy. Yet I got no sympathy and my mum took his side. Having my feelings dismissed made me angry and my psych pointed out that this would have been one of many situations that taught my inner belief of “I don’t matter.” Low self-worth is one of my limiting core beliefs I have learnt through childhood experiences. That’s not to say in this particular memory that anyone was in the wrong, it’s simply how my brain has interpreted the encounter and processed it. 

So we did EMDR for that memory. She moved the rod back and forth for around 30 seconds each time. At each break she’d ask me what came up. Sometimes my mind would wander off and she said that was fine. My annoyance towards that memory began to fade and the entire image of it in my mind became blurry and hard to remember. That’s when she would have me try and picture that memory and change the limiting belief of “I’m not worthy” to “I am worthy.” The more she moved the rod and I had that snapshot image with those words, I started to feel happy and empowered. After about 15 minutes of this entire exercise, I felt nothing towards that memory and my worthiness was a 10/10 (they do 0-10 and 0-7 scales throughout to gage your progress). 

I honestly was sitting there thinking “what is this witchcraft?” How did she just completely shift my mindset like that? That description doesn’t even do it justice and it was more complicated than that, it’s just very hard to describe. She also had me do a visualisation of a calm place to visit in my mind when I get angry. She had me visualise things in my current life that create a 5/10 annoyance, to really connect with them and then place myself in my ‘calm place.’ It totally worked, I no longer cared about those things. 

Today I had my third EMDR appointment. My psych asked me to write down as many memories I could think of that made me angry or upset. She explained that EMDR is not just for major trauma. We are shaped from a series of small events throughout our lives and it’s important to focus on these small things, just as much as the big things. So even the small argument with my brother and my mum taking his side, has helped shape the negative little voice in my head or taught me how to store and internalise my anger. Work through 30 of those tiny life events and I believe I’d be a whole new person. 

I came up with over 50 events that occurred throughout my childhood, up until the age of 18. Some things may have been a passing comment from 1 person in primary school that just stuck with me, teachers not treating me fairly, fighting with friends, being bullied, deaths in the family, instances of feeling left out, jealousy of a sibling and more. My psych read through them and said I had recurring themes around body image, abandonment and something else (can’t remember). So I need to email them to her in order of age and she will group them into themes. Then we will work through those themes. 

Today we worked on my earliest traumatic memory. This was both my nanna’s (grandmother’s) dying when I was 5. I don’t really have many memories of them or their deaths, but I just felt it may have been a contributor to my abandonment issues and may be trapped in my subconscious. In my first appointment with my psych where I talked about my traumas, I cried talking about losing both my nanna’s. I was really surprised that it made me cry and she said there was obviously some pain there. 

This time she asked me what I could remember about their deaths. There wasn’t much, but the most prominent was the morning my nanna died, I was lying in bed and I heard my parents bring my pop home. I remember hearing him coming in the door crying, almost wailing with grief. My thought at the time I heard that was “she’s died.” I knew that meant my nanna was gone. My psych asked me to think really hard about that specific time and hearing the sound of my pop like that and it made me cry. She asked how that made me feel and I said I felt sad for him and could feel his despair. She pointed out I may have also felt helpless, being 5 years old. Connecting to that memory she started the EMDR, moving the rod from side to side. I had tears rolling down my face as I kept the image and sound in my head as best I could and watched the rod. 

She stopped and started the rod several times, checking in with me. I thought of different things about both my nannas each time she did it. I told her that I had a dream about my nanna the other night and I had never dreamt about her before. In my dream she never died, she actually just fell out with mum and they wanted nothing to do with each other. So I confronted her saying “I thought you were dead! Why wouldn’t you just come see us? It’s so incredibly hurtful that we haven’t seen you for this long.” Relaying my dream then made me cry again. My psych asked why it was upsetting me and I said that I was angry at my nanna in my dream and having a go at her. That made me realise that maybe I’m angry with them for leaving me. Because it’s been pointed out to me before that I was harbouring anger towards one of my brother’s for “leaving me” at a young age and I was upset and saying “I’m crying, I’m not angry, I just miss him.” My psych at the time made me realise, my inner child, on an emotional level was angry and felt abandoned. So maybe my 5 year old self was angry and felt abandoned by Nanna’s. We can all relate to seeing on TV or movies, when a loved one dies and the person left behind is angry and saying “how could they leave me?” Or something similar.   

I cried on and off quite a bit during this session and my psych said “there’s obviously a lot of sadness there. I think you really loved your Nanna’s.” I said “I don’t remember them, but yeah I guess I must have if it makes me this upset.” The more work we did, reverting back to the image of my pop coming home distraught and thinking intermittently about my Nanna’s in general and various other thoughts that popped into my head, my upset emotional state started to lessen. Recalling my memories started off upsetting and slowly turned into feeling nothing, with the memory also becoming hard to recall. So we then decided on a phrase to change and add to the memory. 

Due to my abandonment issues and possibly feeling like my Nanna’s ‘left’ me, we realised one of my core beliefs is “I am alone.” The opposite of this is “I am NOT alone,” however this is a little negative. So we changed it to “I am loved.” That phrase was then added to the image of my pop coming home (being an overall symbol for losing both my Nanna’s) and she moved the rod back and forth for a few more rounds. She then upped the sentence to “I am loveable,” and made me add that to the image. It was to try and teach my brain that I am worth loving, not just that others already love me or that I’m not alone. I really struggled with this sentence though and she said it is something we will work hard on next session. My emotional response to my memory of my pop or nanna’s dying was now a 0, it didn’t make me sad or upset, it was just a memory and my level of feeling towards “I am loved” was now a 10/10. “I am loveable” will be a work in progress though. 

During this process I thought about how interesting it was to do this therapy for grief. It can be done for many things, phobias, mental illness, traumas and more. Time will tell how it works for me as an overall picture as I have multiple major traumas ranging from car accidents to sexual assaults (very different things to psychologically grasp) as well as years of dealing with scary and traumatic chronic illnesses, then many minor negative life experiences such as abandonment from friends, being bullied, getting in trouble at school and more. 

I do feel very hopeful that it will make a significant difference to my mind which will in-turn help  me to heal overall. I really recommend people look into it if they are chronically ill, struggle with mental illness or have traumas 

[braindamageforbeginners]

Even More FAQ

What can I expect from chemo? I’ve heard you get unbelievably nauseous

It is even more miserable than I describe; I just downplay the misery both because it’s not fun to write a bitch-fest about chemo, and because if I do turn my full powers of observation on chemo, it might envelope me. The good news is, if an avowed coward like myself can do it, you can, too. There are a variety of drugs to deal with chemo side effects, and, prior to going through it, all the prescription pads come out. I’d recommend making sure you have both a sedative of some sort and an anti-anxiety drug, because those will allow you to sleep through the worst of it. Take zofran as-needed (with a physicians’ oversight), with the warning, that, while you won’t feel nauseous, zofran does make you feel a bit queasy, causes constipation, and, if you accidentally overlap your doses, will result in an amazingly vicious headache. I’m on two different types of chemo (Marizomib and Temodar), on Day 1 of each cycle, they’re doubled up. I don’t drive or make life-changing decisions while I’m on chemo, you might want to institute a similar policy. Because there’s an 8-12-hour delay on the Marizomib side-effects, even if I’m in the chemo ward at 8, I can duck into back into bed before the worst side effects occur. And you’d be amazed at how simply lying down in a warm bed can alleviate a lot of stuff. I usually break chemo issues into four broad categories: 1. Nausea, 2. Physical discomfort 3. Anxiety/emotional issues (usually tied into #2, although Marizomib can cause some weird hallucinations) 4. Exhuastion/fatigue. For nausea, I use zofran and/or THC (usually with CBD). If you have a chemover the next day, try a zofran with the morning meds. For pain, I mostly use CBD (yes, even though it’s not as bad or fatal as it used to be, chemo can still kill)(also, you can use OTC stuff like acetominophin, but, at the doses I’d need, it’d burn out my liver in a few months). You take temodar at night, and, since the Marizomib effects don’t really hit until late, I usually don’t eat for the three hours before bed, take all my bedtime meds (which includes a sedative, which I recommend), and try to sleep through it. As far as the emotional issues, I can only speak for myself, but you’re not going to be feeling mentally great if you’re in pain and fear. I use CBD and very low-dose klonopin to help with that (when you wake up at two am in a panic - and you will - go for the klonopin and CBD to help get back to sleep). As far as the exhaustion and fatigue symptoms, well, I use caffeine to make it through the worst of the exhaustion. Fatigue is the “your day is done until you take a serious nap.” It sucks, but I just kind of have to go with whatever’s needed at the time. Consult your physicians, though. Also, keep in mind that your “maintenance” doses can increase during your treatment. I’m on roughly four times the dosage i was during the six-week initial treatment, and I can definitely tell the difference in terms of comfort. Speaking of comfort, you may or may not want to look into a PIC line or CVAD; some folks swear by them, since I had a (temporary) shunt in my skull a year ago, another semi-permanent opening just didn’t appeal to me. I still think that was the right choice for me.

My insurance company is refusing to pay for my treatment.

Now that you have a chronic illness (bad news, most cancers are being reclassified as chronic, not acute, diseases), you’re an insurance liability, not a customer. Yes, they can have you thrown out of a hospital - it’s happened to me on a few occasions. It’s rather telling that I’ve had the conversation regarding medical malpractice (the likelihood that your hospital or doctors are going to kill you) and insurance with two people; a stranger and a friend from med school. And it’s really telling that all I had to say to my med school friend was, “Move now, and by any means necessary, because you’re on the clock and the system isn’t designed to help you.” I had to spend 15 minutes trying to prove to the stranger that it is 100% legal for insurance companies to let you die of a preventable death. According to some friends, cancer qualifies you for medicare (glioblastoma is a very special type of mega-deadly disease that qualifies for “compassionate allowances,” which means it moves so fast that all I need to qualify for immediate insurance help/relief is a pathologist’s letter; your mileage may vary, but I’d recommend discussing it with the insurance case workers or social workers at your hospital), which I will absolutely switch to the second I can (I’m on medicaid right now; and I still have a month and change on my treatment schedule; I’ve learned it costs about $250 to switch insurance; obviously, I want to put that off until my health is a little less precarious).

What should I do?

Whatever your doctors recommend. Keep track of your health, since a lot of side-effects of chemo mimic cancer symptoms. Keep your pill organizer filled at least a week ahead of time, at all times, since orchestrating a refill can sometimes take up to a week.

Go to the gym and get in shape. A lot of long-term survivors have noted that a lot of dangerous cancers are quite treatable, if you can survive the experience. This is me after literally a year of treatment, in probably the very best physical shape of my life:

Keep up-to-date on the latest treatments on your disease (PubMed and the FDA’s Clinical Trials website are a God-send for that). I will never forget seeing that, in the week after John McCain died, the list of GBM-related studies registered with the FDA went from 125 to over 1200. That was the start of feeling like I might survive this if I just live long enough.

Read all those books you’ve put off because you didn’t have the time, See all the dumb Disney movies that you’ve wanted to, but came out when you were an adult. Write that book or movie that’s in you, because this might be your last chance. Be kind on the way - everyone’s journey is hard and we’re not an innately empathetic species. And be kind to yourself - It wasn’t until my initial “break” that I realized how tired and run-down the treatment schedule made me feel. Having said that, I’d also advise everyone to take the very nastiest, harshest, most-aggressive treatment you can, and stick to it like your life depends on it (I know from first-hand experience that once treatment options are removed, that’s really bad, and those treatment options don’t come back a second time).